Down Syndrome Awareness: A Guest Post by Darla

Just over 3 years ago, at age 44 almost 45, I gave birth to my 8th child, my son, Ashton. During my pregnancy, I had foregone the invasive testing and so I approached my delivery with a sense of fear. See … he was my fourth child born to me after 35. I was aware of people’s attitudes towards me with each birth … they thought I was playing with fire! I heard it often … “You know you’re increasing your chances of having a child with Down syndrome.” I received the message loud and clear that: If I did have a child with Down syndrome after that certain age, I would actually be blamed for wanting a baby beyond 35. To me, the knowing glances when I was grocery shopping would be *almost* the most frightening thing about it, right after having a baby with health problems, and facing the unknown. I was shocked at my own feelings about this. Why DID I let what other people think weigh so heavily? Why DID I feel so much fear about parenting a baby with Down syndrome? Life as I knew it would change forever, right? *Something* bad and unknown would surely befall us, a feeling deep inside me warned. I developed a deep interest in Down syndrome, but nothing medical can possibly replace a true life experience.

As I tried very very hard to understand the brick wall of foreboding … suppressed memories started breaking away from the cement blocks they were tied to … gasping for air making their way to the surface from the ocean of my consciousness. I had known and loved a boy “like that” once. In fact, he was my stepbrother, the son of the mother who raised me, but not him. His name was Anthony James, we called him Tony and he was 2 years younger than I was. Tony was institutionalized before the age of 4. I don’t know exactly when because when my father married my stepmother, I was 6 years old and he was already living in the institution. Can you imagine being given away by your mother to an institution? It was par for the course during that time. I have some of Tony’s baby pictures still and so I know he was with his mother until at least age 2. Tony only came home for holidays and special occasions. To a me as a 6-year-old, Tony’s situation was a puzzle. What happened to Tony to make him as he was? Was it contagious? Why did they give him away? Why does he have to go back there? Are they going to give us away too? At 6 years old, my analysis of Tony was: Tony was a good human and I loved him. He gave very tight hugs. If I was getting reprimanded and cried, Tony cried with me. If I was sent to my room, I could count on him to find me and sit there holding my hand. One of the things he often said was “It’s ok Darla.” (My parents were no picnic) We played with our dog in the backyard, which Tony loved. He was so gentle to animals. He enjoyed lining up Hot Wheels and we’d help him. Tony never wanted to go back to the institution. He cried, held onto us and didn’t want to get into the car. My sister and I also cried. It seemed so wrong to tear him away from his family and it always took a while to shake that horrid feeling after he left. Something very wrong was happening and we knew it. As a side note: My parents were extremely embarrassed of some of the things Tony did things he wouldn’t have done if he had not been institutionalized. When he was really upset, he would sit down and rock and cover his ears. These things to them seemed like the very things society disapproved of, but ironically, they were actually caused by society itself. Because children with Down syndrome were not given a chance to be anything else, their capabilities were limited and thus became like a self-fulfilling prophecy of our society. It took some brave souls who would not be pressured by others … those who would follow their own hearts and parent their children before anyone could see the real potential.

Very early on, I sensed that because of society’s intolerance at that time, my parents were ashamed. Even good-hearted people wanted to sweep the issue under the rug and pretend it never happened. My Stepmother had mosaic Down syndrome but was normal (people … I don’t believe in intrauterine murder … but no matter what those tests show, they can be wrong! ) , she only found this out after Tony was born…after a few miscarriages when they sought a genetic answer to her miscarriages. When my father found out that she had a high chance of having another child with Down syndrome, he had a vasectomy against her wishes. I know this made her feel very defective and it seemed like Tony came home less and less. Having Tony around was a reminder of her own “imperfection” and as well…the imperfection of a society not really ready to let people who were different be a part of it. I once read a poem she wrote about Tony, that I found on her desk when I was around 10 years old which said “You are also a part of this universe … God’s creation … You have a right to be here!” I knew then that she was herself a tortured soul and later I realized that she was, in a way a victim of other people’s opinions. Tony’s being sent away wasn’t only her choice, but something she was expected to do. Sending him away meant rejecting a part of herself. She wanted to reconcile all of these things but they made her a bitter and confused woman. As an adult, I feel so sorry for her. Sad that they told her she should give away her son, sad that she felt so confused about his value and hers as human beings. As children … we felt it all. We could feel the thickness of the air around others, the tenseness, the sadness and the shame, and we knew we had a secret brother.

Many years passed and I did not get to see Tony often, but one Thanksgiving, they brought Tony home. It had been 7 years since I had last seen him and I wondered if he would recognize me as an adult and that 50 pounds I had gained. He did! He came to me and hugged me so tight and said my name and cried. He had missed me too! He then looked at my baby in the carrier and asked “Is this your baby Darla? He is so cute!” as his trembling hand with crooked fingers reached so carefully to pat my son’s head. I just started crying, realizing what this meant to him, his understanding greater than I ever knew. I realized how much we had missed. I took a good look at this now man and I was just so overwhelmed at how wrong it all was … I let him hold my baby. I wondered how different things could have been. I am sad to say that this was nearly the last time I ever got to see Tony. My parents don’t want us to know where he is. When I was certain I knew, I contacted the agency, they told me they could not give me any information … it was against their policies.

When I was pregnant with Ashton, I knew that I might have a child with Down syndrome. Even with my experiences of Tony, I was very very afraid. I wasn’t afraid that I wouldn’t love him, I knew I would. I was afraid of the unknown. My parents had surely been fearful. What was it really like to raise a child with Down syndrome? Could I cope? Was the family forever changed as my parents had made it seem? Would he be born with a heart defect? Would I be guilty of making him that way? Would people look at me and then back at him with that certain knowing look? I would want people to look at my baby and see a child, but maybe they would look at him and imagine something different, something of lesser value, even though I know that my child would have been perfect in my eyes. I wasn’t sure I was strong enough for that scene to be repeated over and over again. That is when I met Lisa on a pregnancy/parenting site …

I started following Finn’s life during my pregnancy in 2009 and I was surprised to see: A cute baby with Down syndrome in a normal family. He was not made from a Down syndrome cookie cutter, he was an individual person with an extra chromosome. Lisa’s honest approach was something very real and not sugar-coated, She had her highs and lows, and when you read it, you knew she was telling the truth … Life really does go on. I was able to see her struggles as she dealt with other people’s limited understanding. I was able to resolve that in my mind. How can they REALLY know what it’s like to love someone with Down syndrome if they’ve never been on the inside? I admit that I was still one of those people who had no idea what to say to someone else who had just given birth to a baby with DS, except “Congratulations on your new baby.” I was able to see what life was like for the whole family. The impact Finn had on his siblings was positive, not negative as is still proposed in the OB GYN offices when discussing prenatal Down syndrome diagnoses who say things like “Will this be fair to your other children?”. I was so proud of her oldest son for standing up to people to defend his brother and educate his peers. Watching Finn grow up over the years was a joyful experience for me … almost a guilty pleasure because I connected it with what *should* have happened for Tony. Watching The Morguesses has helped me to understand the difference between the realities and fallacies of raising a child with Down syndrome. I realized then that many of my feelings were tied to trauma I experienced as a child and fears that I had inherited from my parents.

How many women are as fearful as I was when faced with the possibility of Down syndrome? I think nearly all. What the world needs is to be on the inside, not the outside. I think that when people start realizing that it’s not a lot different from raising any other child, fewer people will have abortions. This is one reason I am thankful for Lisa’s blog … I really believe that you are saving lives when you show that your family is just like any other family! At this point, my husband and I are seriously considering adopting an orphan with Down syndrome. All of my children have “A” names. Wouldn’t it be something if we added an Anthony to our family?

Thank You so much Holly. I may never be able to stop crying about it myself…but I hope to someday adopt a baby that I can make it all better for. A child that I can give that comfort to…To teach him or her that they are worth the sun, the moon and the stars.

My lap is a bucket of tears. Tears for you, your family and especially for Tony and all that are institutionalized because they have Down syndrome. Darla if you EVER would like more stories, more friends, please look me up on Facebook. I would love to meet your family and share my Noah (Ds). Vonda Weikert